low dose hydrocortisone without impairing immune response

Unless it is the pathogen(s) that have caused the endocrine dysregulation to promote their own survival over ours.

Without sufficient cortisol, no matter what the reason or cause, we are vulnerable with a weakened immune system and at risk of death. That is a real and documented risk that personally scares me much more than taking a physiological dose of a hormone I should be producing anyway.

And there is no evidence that the adrenals are irreversably harmed after taking steroids even for long periods of time. There are reports in the literature of adrenals coming back on line after twenty years of treatment.

Click to expand...

What is the pathogen, btw? I'm hoping you aren't going to say "elevated viral titers in certain subsets of patients" like I keep hearing from the same five members on PR. And the embedded drug reps that continually flog the same expensive drug.

Heaps I was prescribed HC by a thyroid specialist here in the UK, I didn't take it because I was so frightened of the possible effects, was I right? who knows. I'm certainly no better, in fact worse, I too would be interested to hear of other's experiences with HC.

Click to expand...

They say if you have adrenal dysfunction then it needs to be treated so your thyroid works properly. My underdstanding is that it helps t4 convert to active t3. Most peoples concerns are really with high doses, so depends what dose your doc was putting you on?
Here is an interesting read on HC and adrenal dysfunction http://www.cfids-cab.org/rc/Holtorf.pdf

Unless it is the pathogen(s) that have caused the endocrine dysregulation to promote their own survival over ours.

Without sufficient cortisol, no matter what the reason or cause, we are vulnerable with a weakened immune system and at risk of death. That is a real and documented risk that personally scares me much more than taking a physiological dose of a hormone I should be producing anyway.

And there is no evidence that the adrenals are irreversably harmed after taking steroids even for long periods of time. There are reports in the literature of adrenals coming back on line after twenty years of treatment.

Click to expand...

What pathogen do you have? I don't know of anybody with ME/CFS who has a proven causative pathogen. You may have opportunitistic reactivations. I have four. And "elevated titers in certain subsets of patients" doesn't cut it. The horror stories of taking too much HC far outstrip the pain of waiting for further research on this issue. In fact, this thread is irresponsible. People playing doctor with potentiallly dangerous medicine.

What pathogen do you have? I don't know of anybody with ME/CFS who has a proven causative pathogen. You may have opportunitistic reactivations. I have four. And "elevated titers in certain subsets of patients" doesn't cut it. The horror stories of taking too much HC far outstrip the pain of waiting for further research on this issue. In fact, this thread is irresponsible. People playing doctor with potentiallly dangerous medicine.

Click to expand...

who is playing doctor, most people are doing this under supervision of their doctors im guessing. Know one is being told to do so otherwise??

The doctor who authored the paper in Dr. Holtorf's review, for sub-clinical "hypo-corticolism," was Dr. AJ Cleare of London. He claimed great benefits to prescribing low dose HC.

I looked in Pubmed, and as of late 2011, this is what Cleare is now saying about hypocorticolism (he is prescribing psychological counseling for low cortisol) and steroid replacement is NOT recommended:

The doctor who authored the paper in Dr. Holtorf's review, for sub-clinical "hypo-corticolism," was Dr. AJ Cleare of London. He claimed great benefits to prescribing low dose HC.

I looked in Pubmed, and as of late 2011, this is what Cleare is now saying about hypocorticolism (he is prescribing psychological counseling for low cortisol) and steroid replacement is NOT recommended:

is it not recommended because why?
psychological treatments mm sounds familiar, that will work for us.
Probably chnaged his tune if in the UK as they treat everything with psychological treatments. have a chat with an overpriced psychobabbler will raise one low cortisol level, maybe it will help addisons disease too and then they can stop adrenal steriod treatments??

mishmash - the doctor I saw who prescribed low dose HC for me is a massively respected doctor who de-registered from the BMA, this was due to the insistence of the BMA that the current levels for measuring thyroid function in the UK were adequate when it is obvious they are not. I wish that I had at least tried the very low dose of HC that he prescribed for me, it seems from the research that at that level it would not cause lasting side effects.
I think I would put him above Cleare anyday. I certainly don't need CBT and as for it helping cortisol levels - dear god help us all in the UK.

What pathogen do you have? I don't know of anybody with ME/CFS who has a proven causative pathogen. You may have opportunitistic reactivations. I have four. And "elevated titers in certain subsets of patients" doesn't cut it. The horror stories of taking too much HC far outstrip the pain of waiting for further research on this issue. In fact, this thread is irresponsible. People playing doctor with potentiallly dangerous medicine.

Click to expand...

i think this thread shows great responsibility as it quotes source of having inadequate adrenal function can safely be increased to within normal limits with a natural hormone and actually improve immmune functions as well as other health aspects. With this information they can then go and talk to their doctor about trying this medication that has been help by a number of cfs/me patients. I havent heard too many horror stories at all when patients used low dose HC between 5-15mg. comparing positive stories with negative stories using low doses in cfs/me, the positive one we hear much more about.

Also u play with dangerous drug like klonopin but we wont mention that because its you.
This thread was started to find peoples experience with using HC and to show an article in the safe use of cortisol. Im sure we could go all day exchange studies opposing someone elses few, pub med probably has thousands of studies, but i would really like to hear from people who have really used these meds in low doses, not someone who hasnt used them and is trying to scare everyone off it without looking into the facts. Those people treated by their doctors, i think we would all like to hear their fews and experiences using it on cfs/me patients

I think its a possible treatment that can help a good percentage of people, as many cfsme people have low cortisol/dhea levels, so bring them up to a more normal level has to be better for their physiology. Just like a good percentage have high viral loads to the herpes viruses where treating them with antivirals helps. Another string in our bow, although some choose to not use that bow then thats their choice to which is not a worry either.

I agree with opportunistic infections but im not about to let them run wild if i can help it, i would like to treat/prevent them causing more damage.

mishmash - the doctor I saw who prescribed low dose HC for me is a massively respected doctor who de-registered from the BMA, this was due to the insistence of the BMA that the current levels for measuring thyroid function in the UK were adequate when it is obvious they are not. I wish that I had at least tried the very low dose of HC that he prescribed for me, it seems from the research that at that level it would not cause lasting side effects.
I think I would put him above Cleare anyday. I certainly don't need CBT and as for it helping cortisol levels - dear god help us all in the UK.

Click to expand...

There aren't any responsible docs who will put sub-clinical patients on HC. I have actually known two patients who have been on it back in the 90s. And there was impairment in bone density in one case, and further worsening of CFS symptoms in another. There is sometimes a good reason doctors are restricing certain medications from you. Not everything in this world is a conspiracy against you.

is it not recommended because why?
psychological treatments mm sounds familiar, that will work for us.
Probably chnaged his tune if in the UK as they treat everything with psychological treatments. have a chat with an overpriced psychobabbler will raise one low cortisol level, maybe it will help addisons disease too and then they can stop adrenal steriod treatments??

Click to expand...

I really don't know how to respond, actually. You post a document that you say supports your findings. I read the document, and there was one doctor (Cleare, 1999) strongly supporting sub-clinical use of HC in CFS. I checked for later studies, and it turns out he is no longer supporting this therapy. The fact that Cleare commended psychotherapy as a treatment for CFS means he's probably a dolt to begin with, and his entire body of work is not to be trusted.

Your only tactic is to be antagonistic to anybody who disagrees with you, so of course something like fact-checking is not going to matter to you. You just take every treatment that comes across your screen and mark it is proven. For you, the fact that no one else has benefitted, is certain evidence of veracity. This has become a waste of time.

I really don't know how to respond, actually. You post a document that you say supports your findings. I read the document, and there was one doctor (Cleare, 1999) strongly supporting sub-clinical use of HC in CFS. I checked for later studies, and it turns out he is no longer supporting this therapy. The fact that Cleare commended psychotherapy as a treatment for CFS means he's probably a dolt to begin with, and his entire body of work is not to be trusted.

Your only tactic is to be antagonistic to anybody who disagrees with you, so of course something like fact-checking is not going to matter to you. You just take every treatment that comes across your screen and mark it is proven. For you, the fact that no one else has benefitted, is certain evidence of veracity. This has become a waste of time.

Heaps I was prescribed HC by a thyroid specialist here in the UK, I didn't take it because I was so frightened of the possible effects, was I right? who knows. I'm certainly no better, in fact worse, I too would be interested to hear of other's experiences with HC.

Click to expand...

Your doctor could have been giving you HC to help the T3 thyroid ushered into the cells. If cortisol is too low you take all the thyroid meds you want. but it will not be helping you. All these hormones are tied to together with some having feedback loops that require you to be very careful of the dosage. Some don't have fedback loops and don't have quite as sensitive dosing.

I looked in Pubmed, and as of late 2011, this is what Cleare is now saying about hypocorticolism (he is prescribing psychological counseling for low cortisol) and steroid replacement is NOT recommended:

Click to expand...

He's never recommended hydrocortisone replacement, even when it was shown to be helpful in CFS patients at a low dose and with no side effects.

He's part of the BPS school and frequently publishes with Simon Wessely. When physiological abnormalities are found, they are assumed to be secondary effects. Hence in his little world, hydrocortisone (or any other drug) will never improve symptoms - at best, those drugs might allow CBT to work better in improving symptoms in resistant patients.

At the end of the day, Cleare is a BPS psychiatrist, and I would not believe a single thing he says without very close scrutiny of the methods being use in his studies and how he reaches his conclusions. The study I just mentioned, for example, excludes patients with "unwillingness to change", personality disorder (which could include being physically dependent on someone else), and "untreated severe anxiety or depression" which most patients with a multi-system physical disease would qualify for based on the questionnaires they used. Despite all of those exclusions, 16 of the included patients were having a current major depressive episode at the time the study commenced.

I have no idea if you're right or wrong regarding your stance about hydrocortisone, but Cleare is one of the last people I'd look to as an objective and scientific authority. Relying solely on an abstract as a source of medical advice is also quite ridiculous.

Mishmash - conspiracy theory??? I don't understand, if you mean do I think the likes of Cleare, White Wessley, Chalder etc. run a tight ship with regards to informing research, advice for NICE etc for CFS/ME then yes but in literal terms not really.
What I do hope always is that someone will come along soon with a piece of research that will blow their psychological theories out of the water forever.

There aren't any responsible docs who will put sub-clinical patients on HC. I have actually known two patients who have been on it back in the 90s. And there was impairment in bone density in one case, and further worsening of CFS symptoms in another. There is sometimes a good reason doctors are restricing certain medications from you. Not everything in this world is a conspiracy against you.

Click to expand...

Actually, Dr. Teitelbaum put me on low-dose Cortef in the early 90s. It worked great and I didn't have side effects or a post-use deterioration.